Talking about CML can be empowering. When it is hard to make sense of what is happening to you and how you feel, having people around you who care about you and understand you can make a big difference.
Family and friends can support you through your CML journey in many different ways:
Some people are good at offering a listening ear
Others might take an active role in supporting you to learn about CML, its treatments and the jargon that doctors might use to talk about it. Having a good base of knowledge about something like CML can make it make it more manageable and help you to feel in control
Some might be handy helping out in a practical way, like driving you to hospital appointments, helping with childcare, or doing a bit of cooking, shopping or housework
Some people are great at taking you out of yourself, getting you interested and involved in something other than CML, making you laugh and helping you feel more like yourself
It may take a bit of time to know which ways suit you and your family and friends best.
Starting the conversation
Talking about your CML with your family and friends can be difficult at first. But remember, it’s important to give your family and friends the chance to talk openly with you. They may have their own worries about how this will affect your relationship or the social group/family dynamic. Talking to teens and children can be especially tough, as you will want to reassure them yet avoid painting an unrealistic ‘rose-tinted’ picture. Honesty and openness from both sides gives everyone the chance to express their feelings – and remember that everyone is entitled to feel however they feel, and that those thoughts and emotions might change from day to day. There is no right or wrong way to feel – so long as everyone has space to talk about their thoughts without causing a row. Getting upset is normal and human, and some people may need some space and time to work through how they’re feeling.
You don’t need to stand up and give a lecture about it all, and you also don’t need to tell everyone in earshot – just say as much as you feel comfortable with, and only to the people you want to.
It can help to agree on what words you all use, so everyone knows what’s being said. For example, younger children might just need to know you’re taking “my medicine”, whereas older family members can use more specific terms like “TKI”. Some people take comfort from using the correct medical terms for e.g. “cytogenetic response”, others might prefer to know as little as possible and just get the gist of your journey e.g. “The CML is staying steady right now” or “I’m having a tougher time at the moment, so I’ll need to rest more for a while.”
Keeping the lines of communication open
Life with CML can have many ups and downs, and you may feel differently (physically and emotionally) over time. Keeping people on-side and maintaining positive relationships can help you feel connected and your loved ones feel more empowered. Be honest, and encourage those around you to be honest too – suppressing feelings can make it harder to talk openly. Reassure family members how much they mean to you, and don’t forget to ask them from time to time how things are in their own lives. It might be a relief for them to find that they can still talk to you about things that are going on in their lives, like school, work, other people, beliefs, hobbies and social lives.
Letting people help
Many people find it hard to know what to do when someone they care about becomes ill. They may get too involved, fussing and trying to do every little thing for you; they may go the other way and try to minimise it all and do nothing. How involved family should get with your CML is something that you can decide together, to provide the level of support you need. The best way is to be clear with people about what you want and what you need. CML doesn’t have to control your relationships with your family, or become a barrier to family life. By working together you can keep CML as something important, but not something that rules everyone’s lives. Experiencing the demands of a CML diagnosis and treatment journey may even become an opportunity to develop closer relationships with those that matter most.